Disclosure Etiquette, Part 1: Do I Have to Kiss and Tell?

This is the first in a series of articles exploring the etiquette associated with telling other people that you have HIV/AIDS.

Over the past 20 years, I have watched people living with HIV/AIDS suffer and struggle with disclosing their status. The fear of rejection keeps many of us quiet but causes others to reveal intimate information at inappropriate times and places--such as on a first date in a cozy restaurant, with the people at the next table dipping into the conversation, as an HIV-negative friend once experienced when her dinner companion told her he was HIV-positive.

Deciding to share your serostatus is one of the most difficult things a person living with HIV has to do. Unlike on television, where reality-show participants sometimes disclose their HIV status in such a way that allows editors to script the conclusions, real-life disclosures occur in real time; the outcomes are uncertain. We wonder: What will this person think of me? Will they reject me? Try to hurt me? Wonder what "horrible" thing I did to deserve my fate? And after sharing my most intimate business, will I lose the relationship?

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When and whether we decide to tell often depends on how we believe the person will react. If we think the person will be cool about our status, we're more likely to tell, or to tell sooner. If we think we'll be rejected or get some other negative reaction, we may either consider not telling or actually not tell at all. Our approach also hinges on how vulnerable we are willing to feel and how much we are willing to risk in the relationship. That said, I do not believe that it is ever acceptable to trick or harm anyone.

Recently a colleague shared findings from a small research study suggesting that people who tell others about their HIV status may not always experience as much stigma from their loved ones as they feel within themselves. This makes me wonder whether part of what we dread is having someone reinforce feelings we've already internalized about living with HIV/AIDS. I know that after two decades of absorbing messages that I am "not good enough" and/or just not "normal," I have internalized feelings of shame, guilt and helplessness. Is this part of what makes disclosure so difficult--that I dread learning that other people will think the same negative things about me that I sometimes secretly think about myself?

I came of age as a person with HIV/AIDS in an era where I was indoctrinated that it was my responsibility to disclose early and often, whether or not it was my intention ever to have sex with the person I was telling. Intellectually I understand this approach, but emotionally it puts me in a straitjacket. What if I don't want to disclose to you? What if I want to become friends first? And if I'm not interested in sleeping with you, why do I have to tell you my personal business?

I had--and still have--nothing to lose and everything to gain by disclosing my HIV status; I am willing to risk much to regain my personhood and shed my lingering sense of internalized oppression. But I have to admit that had I gotten infected today, I might have approached my life much differently. An HIV diagnosis is no longer the end of the world. Many people now know that if you are diagnosed early and do what the doctor tells you, you can live a pretty normal life--and life span. You do have to learn how to protect yourself and your partners, but maybe you don't have to tell everything to everybody.

Given this new reality, I am reconsidering my options. I want the choice of telling my friends and colleagues--or not; maybe it's none of your business. And for once, it would be nice if my prospective partners took responsibility for their own health and asked me if I had HIV so that I wouldn't have to carry the burden of telling them first.

Unlike what we see on reality television, life cannot be edited or played back to change the result or make us into someone we are not. People living with HIV/AIDS should have the option of deciding when and where we will reveal our HIV status. We should never do it because we're following some rigid rule from a bygone era. But when and under what circumstances should it happen? The answer isn't always clear. Check back on the fourth Tuesday of each month as I share my thoughts about the etiquette of when and why we should tell.

Comment by: Lourdez H.
(Trenton, NJ 08629)
Wed., Sep. 29, 2010 at 8:14 pm UTC
I have been diagnosed since 1988 I found out from personal experience that telling people who don't mean anything to you is not necessary. I also work in the HIV/AIDS feild for many years. When I tell clients that I have been diagnosed for over 22 years they are encourage. I find that the men who are interested in me don't need to know until I decide tha I am also interest in them. Other people it depends on who they are and what they mean to me. After all I don't tell people how much money I have in the bank and they don't tell me how much they have so what would make me feel that they care anything about my health. I am a 50 year old woman who has been diagnosed with AIDS since I was 28 years old who has a live which consist of so m more than AIDS.

Comment by: Nadene Bigby
(Jamaica)
Mon., Apr. 5, 2010 at 3:52 pm UTC
I strongly be-leave it is everyone personal responsibility to take care of there health and know there HIV status so they can be better able to take care of themselves and persons they come intimately with.

Comment by: Daniel
(Australia)
Sun., Apr. 4, 2010 at 10:09 pm UTC
I don't think I agree with the article. In Australia surveys have shown that, among gay men in any case, 80% will say "no" to sex/a relationship if they find out their partner is HIV+, while nonetheless 95% of guys expect everyone to voluntarily honestly disclose their status all of the time! Sounds like a total fantasy world most guys are living in.
I have always taken the view that it is 100% MY responsibility to practice safe sex, not my partner's responsibility to be 100% sure he is clean; that you should never assume someone is HIV-, that even if he's telling the truth as far as he knows, he might have been infected since his last test without knowing yet and so on.
I have never asked for someone's status. It's irrelevant. They might answer with the truth, they might lie, they might not even know their status. Ask and tell is about the most unreliable way I can think of dealing with the risk of HIV and I don't understand why people consider it so crucial.
The only way to be safer is to use condoms, there's no other way around it.
I'm talking mainly about hook-ups though of course. As far as a serious relationship goes that's a whole other ballpark.

Comment by: Jerry
(Saint Petersburg, FL)
Fri., Apr. 2, 2010 at 10:42 am UTC
There are still 16,000 peolple a year dying of AIDS related illness's each year in this country . IT is not over my friend by no means.

Comment by: Pauline
(Liberia)
Fri., Apr. 2, 2010 at 6:22 am UTC
Thanks very much for your comment.
But one thing I actually want to know about telling others our status. Should we disclosed our status to our incoming partners even if we are not togther yet? And if I do and the person decides to go away and share the news, don't you think it bring stress to me?

Comment by: Dep
(Roanoke)
Fri., Apr. 2, 2010 at 4:10 am UTC
Bravo to you Vanessa for tackling such a tough and very necessary subject! (At least it is to me, and I'm sure for many, many others.) Thank you! and I look forward to reading the series of articles.

Comment by: John-Manuel Andriote
(Norwich, CT)
Thu., Apr. 1, 2010 at 7:49 pm UTC
Thank you for saying all this, Vanessa. It needs to be said. I've been thinking--and practicing in my own life--what you're describing here. I've never had any symptoms of HIV other than what shows up in blood work, so I haven't (thank God) been sick. I feel as comfortable as i think I can about living with this virus and not beating myself up about having it. I just don't believe a microbe "means" anything, and I refuse to buy any idea that HIV is somehow a judgment or indicator of some character defect. It's just part of living in a physical, sometimes dangerous, world. So, no, I don't feel I need to disclose something as intimate as my personal daily ritual of pill-taking--or even the struggle it's been at times to make sure I can pay for my expensive meds. I take my pills in private. I think what I'm saying is I don't define myself as a Person With HIV--and I don't want to be identified that way, either. When I know someone knows me sufficiently to put HIV in perspective, it's one thing. When we've just met, it can overpower all your other positive qualities in the mind of a new acquaintance. Thank you again, Vanessa. I look forward to the additional installments of your thoughts on this vital subject.

Comment by: T.
(Denver, CO)
Thu., Apr. 1, 2010 at 4:19 pm UTC
Vanessa-
What a wonderful thing to take the time to emphasize! I have only been diagnosed positive for a little over one year and have told everyone I feel needs to know. However; those people (people who are supportive, but negative themselves) encouraged me to tell "everyone." I was resistant and glad I was. I have an undetectable viral load and am very healthy so letting the world know I am positive is not necessary. I choose who needs to know about me and I encourage others to do the same. Take control of HIV before it takes control of you:-)

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